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A lung transplant saved me from IPF

Joyce had IPF - but was given another chance. 

When the phone rang at 5.20am New Year's Day I awoke and instantly knew it was the call I'd been waiting almost a year for. The call I'd been praying for, hoping for, the sometimes doubting it would ever happen call had actually arrived.

"Joyce? It's Katey from the transplant unit. Happy new year, I think we may have some new lungs for you."

2 years earlier, in January 2012, I was at my GP's surgery with yet another chest infection and difficulty with breathing. This had been happening quite frequently for a couple of years. I'd noticed it was getting harder to breathe doing fairly simple things like putting washing into the machine and pegging it on the line.

I'd seen my GP several times about it, but he couldn't find a problem. In the end he put it down to anxiety - which didn't really ring true, but because of a couple of close family sudden bereavements I accepted it.

This visit, however, was different. He could hear 'crackles' on my lungs and wanted a second opinion from a specialist, which he referred me for marked 'urgent'.

I hadn't realised that 'urgent' means a patient has to be seen within 6 weeks (it's only 2 weeks if you have cancer), so it wasn't until May that I heard the suspected diagnosis of Idiopathic Pulmonary Fibrosis (IPF) and October, after a biopsy, that it was confirmed. A long worrying wait.

A transplant was my only hope

By this stage I'd started to deteriorate quite quickly and a double lung transplant was considered to be my only medical hope. I had assessments in January last year to see if I was a suitable candidate, and put on the transplant waiting list at Wythenshawe hospital in the March.

"Pack a bag and wait for the call" were the instructions given, so I went home and did just that. It became a very dusty bag as I waited, and waited, and waited. I became very ill over the summer and ended up being diagnosed with pulmonary hypertension as a result of the IPF and was on oxygen 24/7.

By Christmas I hadn't received a single phone call from the transplant team, and started to wonder if I ever would. I know some people get called to the hospital many times before a suitable donor is found and I kept telling myself that must surely be worse than no call at all.

The hardest part, I found, was the look of disappointment on my family's faces every time the phone rang and it wasn't the hospital.

And then, when we least expected it, it happened

Joyce IPFAll the plans we had made instantly changed. It was the first morning of the new year. Friends who were on standby for lifts to the hospital had been out celebrating the evening before, my two teenage boys had also been out celebrating.

We'd had friends round for dinner (though I'd been too ill to drink or eat more than a couple of forkfuls) and my husband knew he wouldn't be safe to drive.

What to do? How to get to the hospital? I became my father's daughter, "It's New Year's Day, I'm not paying double fare in a taxi - I'll drive!"

We woke our boys to let them know what was happening. I found that really difficult thinking it may well be the last time I saw them. But leave we did and drive I did, thankfully there isn't much traffic about on the M60 at that time.

It wasn't completely straightforward, but the transplant went ahead. 12 hours of surgery by an incredible team. There were a couple of slight blips along the way but eventually I returned home five and a half weeks later.

And what a difference it has made. Slowly day by day I'm getting stronger. I've been totally off oxygen now since January and the hospital are really pleased with my progress. Physically it has been as I expected, if not slightly easier, but I don't think I was prepared for how emotional I would find this stage.

I am so thankful

Life will never be back to normal but we're looking as a family to create a 'new normal' and I am so thankful to be given this second chance. Thankful to my donor and their family, who in their darkest hour could find the courage and grace to bring light into my life. Thankful to the wonderful team of medical staff at Wythenshawe hospital. Thankful to my precious husband and boys who have shown such bravery and patience with me and thankful to my wonderful friends who have supported, cared and prayed for our family - your prayers have been heard.

For those people who are still waiting for their call, I say never give up believing that it will happen. Never give up hoping. That call does come, lives are changed because of selfless donors prepared to give a gift. Somebody you have never met, cares for you. Incredible!

This week is World IPF Week. You can make a huge difference to thousands of lives by getting involved - find out how.


Brilliantly inspiring and wishing you all good health and wellbeing-so pleased life is good for you now Joyce.
I am also thankful,for having the bravest and most wonderful sister anybody could wish for. Love you
Joyce just reading your story will give hope to a lot of people out there waiting for that call, And I am so glad all when as well as expected It will be a long hard road for you but with your determination and your family around you I'm sure the future is good.
Thanks Joyce for letting us hear your story, I am currently on the Transplant waiting list so its a great help to see someone who has had a transplant doing so well. I have Pulmonary Fibrosis but they think they have identified a cause so its not idiopathic (unknown). Your an inspiration to all of us fighting PF and other lung conditions and I wish you a long and happy life ahead. Tony :)
Congratulations Joyce on your New Life, New Lungs, you have given me hope for my future as I have IPF. Love and Best wishes to you and your family.

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28 September 2014